Zachary Robert

Zachary is 5 1/2 years old now. Before Zachary was born, I had several ultrasounds and even amniocentesis test done and nothing showed up except that he had a 2 vessel umbilical cord. The reasons for all the testing was I was 36 and Zachary was my first child.

Well on June 19,1997 Zachary was born. He weighed 5 lb 14 oz. and 19 inches long. I had a c-section only because Zach was breech and he wouldn't turn. Zachary looked a little blue to me but the doctor said he was great. The Apgar tests both were a 9.

At first I couldn't get Zach to eat and he still looked blue to me. I just felt like something was wrong. Well, two days later I was waiting for the nurse to bring Zach in for lunch. I called the nurse because it was getting late. She told me the doctor was checking him out and them she will bring him in.

The next thing I know the doctor and nurse are in my room telling me Zach turned blue and I need to sign papers for them to do some testing on him and that Zach is now in the NICU unit. Well I felt like they ripped my heart out. I couldn't even think. And they wouldn't let me see him. I was by myself and I told them I would have to talk to my husband and sister first. They came right away and I did sign and his was in there for 4 long days. They did every test on him and they all came back normal. Zach was so black and blue from all the needles. I just wanted to take him home and for them to stop.

After all the pulling apart—from "his ears are to low, anti-mongoloid slant, upturned nose and a short thumb", etc..., they said his heart had some problems. Bicuspid aortic valve, small aortic annulus, high aortic arch, and the blood pressure in his right arm appeared to slightly higher than other ones. The doctors wanted to do more testing because they still think Zach's features look like DiGeorge syndrome even when all the test came back normal. I said no and I was taking him home. I will bring him back for the blood work and I'll bring him to the cardiologist but I was not leaving him there. They did all the tests and all of them came back normal. Zach's color looked a lot better and he was eating. I live 3 blocks away if something did happen. I wasn't leaving without him.

Zachary came home and we went to the cardiologist every week. Everything was find until Zach was almost 3 months old. I started getting that feeling like something was wrong again. The cardiologist said Zach was doing great when we saw her on Friday, but by Monday I was back and Zach was in heart failure. I had to rush him to Deborah Heart and Lung Center to Dr. Jacobs. Thank God my sisters were with me. They took me to the cardiologist because my husband was working.

Zach had his first surgical repair of the coarctation, a "Subclavian Flap Aortoplasty". Zach was doing good until he was 3 years old, when they had to go back in by catheterization to opened up some blockages in his aorta [I think 3 is bad or maybe good luck for him.] They now say that Zach has Shone's complex and his aortic and mitral valve have to be repaired or replaced. When, I don't know, I just have to watch him .

With all that, Zachary is doing fine in school and running around like any other 5 year old. Zach is so great, and everybody loves him. We thank God every day for him.